Tag: living

It would have taken me months to write many more essays. Years, probably, before I wrote a really good one. And it would have taken me forever to understand and figure out all that I wanted to understand and figure out.

But what I got are weeks.

The chemotherapy regimen I’ve been on, Gemcitabine, has stopped working. Blood tests show that my tumour-marker levels are rising. My pain is being managed well, but it is getting worse — it’s clear that my disease is advancing. And my appetite has diminished greatly; eating often hurts.

The most promising treatments are not all that promising. They are phase 1 clinical trials of drugs broad enough for any cancer, whose effectiveness is thus far only speculative and whose dosage has yet to be determined. So at this point, they’re more likely to do harm than good.

And because pancreatic cancer moves so quickly, what I got are weeks.

Before I had cancer, I too had years. And for the last year and a half, I had months. It was only logical that it would turn into weeks at some point. And so it happens now.

Marcus Aurelius once asked himself how he would react if a god told him that he would either die tomorrow or the day after. And he couldn’t see what difference it would make.

When you hear that someone has been diagnosed with terminal cancer, it isn’t too hard to be philosophical about it:

“That’s awful. But such is life.”

“Misfortune can befall any of us, can’t it?”

“We never know when our time is up. We must do what we can to live the life we’ve got and appreciate it as we go.”

But when you hear that you have terminal cancer, you think: “Fuck, fuck, fuck. Why is life so fucking unfair?”

In 1974, the philosopher Thomas Nagel wrote a famous paper called “What is it like to be bat?”1 In it, he made the observation that a bat experiences the world probably quite differently from the way we experience the world. And he argued that, in fact, a bat’s experience is so different that we, being human, cannot in principle know what it’s like to be a bat. We can imagine ourselves hanging upside down, eating bugs, using sonar to navigate, and so on. But we’re doing just that: imagining ourselves doing the things bats do. What we’re not doing is imagining what it’s like to be a bat.

This difficulty, of imagining what it’s like to be another creature, is not just there between a human and a bat; it’s there between any two creatures, even when they’re members of the same species. I can imagine, if I try hard enough, what it’s like for me to be in your shoes. But can I imagine what it’s like for me to be you in your shoes? I can imagine myself living your kind of life, but I can’t really imagine what it’s like for you to live your kind of life.

We relate to each other because we have something in common. That’s why it is hard to a relate to a bat, or people who are very different from us. I think this is why small talk exists. If you and I can talk about the weather, then there’s something we can agree on. Now that we’ve established that we have something in common, we can relate to each other.

Deeper connections between two people, though, need more than small talk. They need ground that is not only common but important to both of them. Think of those who share a common struggle: players on a sports team, soldiers in a platoon, students in graduate school. Many of these relationships do not last when the individuals no longer share the same goal, for example, when a player gets traded or when a student drops out of school. Some friendships do last, long after the shared purpose has ended — when the war is over, for example. But the friendships between soldiers persist largely because the history they share matters to who they are now. Few veterans leave that consequential aspect of their lives out of their self-conception.

And those who have been friends for a long time often choose to talk about the past rather than the present. It’s the past we still have in common. And it’s the past we rely on, even when everything in our lives seem to change. We change beyond recognition, and yet, when we get together, we talk about that time we fit all eight of us in the car and Sam, god bless him, volunteered to ride in the trunk.

There’s a gap between us that we don’t want to shed light on. Some things stay the same, but many things do not. What we have in common becomes increasingly diluted by the new important things in our lives: our marriages, our children, our divorces, our new careers, our recent struggles. We think if we put in enough effort, we can imagine what our friends go through. We can imagine what it’s like to have children (or we can remember what it’s like not to have children) and if we try hard to enough to imagine (or to remember), our friendships can still grow.

But here’s where Nagel’s bat swoops in. I don’t know if I can imagine what it’s like to have children. And I don’t know if you can imagine what it’s like to have terminal cancer.

The philosopher L.A. Paul has recently argued that becoming a parent is what she calls a transformative experience.2 This may sound like some purple poetic expression, but it’s a technical term and she means something specific by it. For an experience to count as transformative, (1) you have to learn something you could not have learned without having had that experience, and (2) after having had that experience, you think of yourself differently, or orient your life according to different values. This means that you cannot imagine what it’s like to have a transformative experience, because otherwise it wouldn’t be transformative: the experience tranforms you so much that you are now a different person and you could not have known how you would be different beforehand.

I don’t know if becoming a parent is really, truly a transformative experience, but it probably comes as close as anything. My wife and I tried to have children, but luck again wasn’t on our side. So I will never know what it’s like to have children. I do not know how it would have changed me and what I care about. If you think I’m trying to make this sound sad, I should let you know that Paul is clear in saying that transformative experiences are not inherently positive or, for that matter, inherently negative. It isn’t necessarily good or bad to have them. Precisely because they change you, you cannot know if they are good or bad: if we have not had a transformative experience, we cannot say that it would be good or bad to have it, since we do not know what it’s like; and if an experience changes us fundamentally, we cannot say that it was good or bad for us since we cannot compare it with how things were before since we no longer see things the way we used to.

I don’t know if having a terminal illness is a transformative experience either. Other than hearing the words “it’s incurable” or “your prognosis is months”, being as sick as I am bears no unique phenomenological experiences. There is no sensation to dying (at least not yet). There’s pain, to be sure, and the pain feels different and I feel it in strange new places. But the pain doesn’t tell you it’s dying pain. There’s fatigue also, but we’ve all been tired before. And now, just because it lasts longer and persists despite the usual remedies, the tiredness doesn’t tell you that you’re dying. There are also side effects in treating the illness, but none of those tell you that you are dying either. After all, the same treatment with the same side effects is given to those for whom the disease is still curable. All this probably explains why so many of us do not accept our fates — having one’s illness be terminal doesn’t feel like anything special at all.

There’s only this to the experience: the recurring and constant pain, the fatigue that lasts for days on end, over and over again, the nausea and the headaches, and the ever increasing portion of your time spent inside pharmacies and hospitals, going to them, coming back from them, with doctors and nurses and other people there to help you, with tubes and needles, putting fluids inside you while extracting others. My illness has become my life, or at least a large part of it. But those who have terrible but curable illnesses also live this kind of life.

So what tells me I’m dying? There’s no gut feeling — no gut knowledge that I only have so much time. There’s just my doctors’ words buttressed by data that only they can intelligibly interpret. (One might take all this as reason for me to distrust my doctor and hew my own way. But what it really shows is my unavoidable dependence on experts and how there’s only so much epistemological value to my feelings.) But there is something to knowing that you have a disease that’s going to kill you soon. If you accept that fact, and acknowledge it deep down and in all the things you do, I think it does transform you.

The young prefer spending their time meeting new people over spending it with those they already know well. They are preoccupied by questions such as, “what will I do next?”, “will I become successful?”, “what should I do to become successful?”, “will I find my soulmate?” But the elderly, it seems, are different: they prefer to spend their time with family rather than strangers, and with old friends rather than trying to make new ones. And because they know their time is limited, they want to spend it on everyday pleasures and the people they know they already love.3

When I was young, my family and I would make a yearly visit to New Jersey where my great aunt and her family lived. We would stay there for a week or so and play around their large house, as my mom’s extended family would dote on us. But whenever it was time for us to go, to begin our journey back home to Montreal, my mom’s aunt would cry. She was always a little frail, and I had wondered then, as I wonder now, if she was preparing herself to say goodbye for the very last time.

I do that too now. Friends visit from far away, and I wonder if it’s the last time I will ever see them. Friends talk about visiting me in four or five months, and I wonder if I’ll be around to receive them. I went to McDonalds a few weeks ago — I have a small but special fondness for the place — and I wondered if it was the last time I’d ever eat there. Epictetus counselled that we do that on purpose: we should try to imagine each meeting with a loved one, each experiencing of an ordinary pleasure, as possibly our last, even when we’re not terminally ill, so that we may learn to appreciate what we have and not dwell too much on what we don’t. He thought it would change us for the better. I have tried to follow his advice for many years, long before I was sick. But it was hard to do in any real capacity. Now it has become part of my everyday. I’m no longer sure if Epictetus is right about whether this practice changes us for the better. But I do think it changes us.

So what this means is that there is this gap between me, who is dying, and you, who are not. If you are young, you still want to do things that can shape the rest of your life. If you are older or if you are sick like me, you might not care so much to shape the rest of your life as much as to live it and appreciate what you can. These differences between us are unavoidable and understandable. But it means that no matter how much some of you are there for me, I still feel alone. You do not know what it’s like to be dying, and you probably can’t know, until it happens to you.

I suppose this is why support groups exist. Only other people who are living with cancer knows what it’s like to live with cancer. Only others facing a terminal illness really know what it’s like to face a terminal illness. And when I go to these support groups, I do feel less alone. But only for a short while. Not everyone at a support group is dying, and not every dying person accepts that they’re dying. But more to the point, these people are not my friends or my family, and, being short on time, I’m not interested in making new friends.

I’m not the only one this illness has transformed. It has turned my wife into someone whose husband is dying. And it will eventually turn my wife into a widow. I do not and cannot know what it’s like to watch your husband or wife suffer through this illness, and I will not know and cannot know what it’s like to lose the love of my life. I can only imagine what it’s like for her now and what it will be like for her then, and she can only imagine what it’s like for me – and we both know that such imaginings can only give us the barest outline of what our experiences are like. There are two of us transformed by this illness, but in different ways. My wife and I are both left a little alone by this illness, left incompletely understood, even by each other.

But despite that, we are here for each other. And even if none of my friends and family really understand what it’s like to be dying or what it’s like to have a husband who’s dying, they are here for us — unwavering and stalwart. Now that life seems so fragile and short to me, all this seems like a wonder.

When I was first diagnosed with pancreatic cancer, I was given a terrifying number: 10. On average, someone diagnosed with Stage 4 pancreatic cancer has ten months to live.

And what sounds scary is the fact that I was given this statistic a little over seven months ago, which makes it sound like I have only about three months left to live.

But this logic isn’t right. I have survived the last seven months (actually, I’ve lived the last seven months intensely), and so the number I should be concerned with is not

“How many months, on average, does the diagnosed Stage 4 pancreatic cancer patient, who has just been diagnosed, have?”

But

“How many months, on average, does the Stage 4 pancreatic cancer patient, who is still alive after seven months, have?”

The answers to these two questions are different, because they take their averages from two different sets of people. To answer the first question, your set would include everyone who’s been diagnosed with Stage 4 pancreatic cancer. And that means including all the people who did not make it to seven months: those who died within one month after their diagnosis, two months after their diagnosis, and so on.

But to answer the second question, you would not include everyone. You would exclude all those people who died within seven months of their diagnosis. And so the average number of months this group of stage 4 pancreatic cancer should be higher. In other words, the answer to the question “how many months do I have left?” should be more than three months.

The difficult thing is that I have no idea what the answer to the second question is or how many more months I actually do have.

But I’ve recently got on good terms with uncertainty, which is a good thing, since uncertainty — about life and death no less — has forced its way to become my constant companion.